The story of living in spite of melanoma, CLND (X 2!), metastasis, vaccines, anti-PD-1, lung removal, and stereotactic radiation. (With a little adenocarcinoma ex-goblet cell carcinoid thrown in!!!) The story of life with family and friends. {Posts under ~ Sew Chaotically, Travel Chaotically, and Chaotic Cookery also housed within! A girl's gotta have fun!}

About Me

Who am I? That is a question the rest of you could probably answer better than I. I am a wife, mother, daughter, sister, friend, pediatric nurse practitioner, cook, teacher, gardener, lover of words and music, occasional seamstress, and homemaker. I do have a couple of talents of questionable merit: I can create a decent meal in less than 30 minutes. I can feed and/or soothe almost any baby. And I can remember practically any song I've ever heard. For the rest, I'd rather those who know me decide.

Monday, December 31, 2012

As I drove to work today, the sun was rising behind the ridge, smearing great rose colored streaks across a sky filled with fat, cottony, pink and purple clouds. Thinking. Wishing. Missing all the amazing people I've "met" who can no longer share such a sky with me....and fervently dreaming that somehow....they could. Never have I met such a kind, generous, life loving, beautifully positive group. Andy. Randi. Mike Brockey. Hillary Quinn Kind. Meagan MacPhee. Shellebrownies' Don. 9TS. Jillian. Eric of EricnJill. Gavin Snow. The words and videos that these amazing spirits and their loved ones have so generously shared with all of us provides enough inspiration and life lessons to cure most of the world's ills, if we would but listen.

Yet, some comments have hurt my heart of late. They are meant with kindness, I know. Or, intended as words of encouragement by those who don't know what else to say. At times spoken, perhaps, out of fear, by those in the midst of their own battles. It is always something like: "If you stay positive, you can beat this." OR: "People with upbeat attitudes live longer."

Most people who know me would never suppose I am anything but positive and optimistic. Not that I am hiding the moments when I'm down. I simply choose to be positive and hopeful most of the time. I have even been berated for being ridiculously "hopeful" in the face of my diagnosis. My husband's pet name for me is "Bubbles" due to my [supposed] ebullient personality. But, my admitted over sensitivity to these remarks hinges on this....when you say things like the phrases I noted....it could be implied that those who lost their battle with melanoma must have somehow lost their spark, their positivity, their good, fighting attitude. And, I KNOW that is just not the case.

As much as we would like to truly believe that positivity can overcome anything and some studies demonstrate a beneficial effect from the "laughter is the best medicine" sort of thing. Many books and studies out there prove otherwise. David Rakoff, the incredibly funny, journalist and writer (1964-2012) talks about many of them in his book "Half Empty". He experienced 18 months of chemo and radiation at the age of 22 when diagnosed with Hodgkin's disease, only to have a tumor that eventually took his life recur in his shoulder and metastasize. Perhaps, he said it best in an interview with John Stewart. "There was a study that showed that the long term mortality of people with lousy attitudes is no different from people with great attitudes. So, you can be the worst bastard on the ward and you will not die at any greater rate than the other people. People will simply be gladder when you do!"

I don't intend to give up on hope or positivity. Heck! I don't want make myself and all the people around me feel miserable! I guess this is my long, ranting way of saying I begrudge the implication by anyone, that these amazing people were any less determined, confident, positive, hopeful, fighters than any of those among us just because they are no longer here.

Oh, the people I was lucky enough to "meet". I am proud to have known you all. You touched my heart. You taught me much.

I will always remember.

I will try to live my life with as bright a spirit as each of you. - c

Friday, December 21, 2012

Since the data on interferon has come in as somewhat underwhelming, you don't have to read my posts long to realize I am not a big fan. However, since many of us dealing with melanoma have little other choice...and in my desire to post all information fairly....this study came to my attention and does have some potential bright spots. For what it's worth:

From: Expert Review of Anticancer Therapy, November 12, 2012

An update on pegylated IFN-a2b for the adjuvant treatment of melanoma

Agarwala SS. St Luke's Cancer Center, Bethlehem, PA

Abstract:For patients with localized melanoma, excision of the primary tumor, including lymphadenectomy for nodal metastasis, is standard treatment. However, patients with large primary tumors (stage IIB and IIC) or stage III melanoma have a relatively poor prognosis owing to the high risk of recurrence. High-dose IFN-a2b and pegylated IFN-a2b (PEG-IFN-a2b) are the only approved options for adjuvant therapy of Stage III melanoma, but the lack of comparative data has led to considerable confusion in choosing between these options. In this article, current evidence regarding the pharmacokinetics, efficacy, safety and tolerability of adjuvant PEG-IFN-a2b in patients with melanoma is reviewed, with frequent references to and comparisons with data using IFN-a2b. Particular focus is given to the pharmacokinetic differences between IFN-a2b and PEG-IFN-a2b and their implications for the treatment of high-risk patients. In addition, emerging evidence suggests that PEG-IFN-a2b therapy may provide clinically significant overall survival benefit for selected high-risk patients.

The lady has a way with words, at just the perfect time. Innocents die each day. From hunger. From bombs. From men with guns. Here. The war torn Middle East. Yes, each case is different. Yes, each example has its own complicated history. But, it is wrong. All of it. Every time. Every way.

But, I promise to try...to do things right. And, I know many others who do, too.

Sunday, December 16, 2012

...the Four Horsemen of Anti-PD1!!! Well, do what you will. Just finished an INSANITY workout with Shaun T!!!! Yeah, yeah.....it was only the Cardio Recovery set....and yes, I did feel like I was going to throw up once...but... I DID IT!!! So, there! - c

Saturday, December 15, 2012

New Anti-PD1 adjunctive trial:
According to Dr. Weber, he was "just" notified of a new anti-PD1 adjunctive trial set to start. (These are the trials that I feel are essential for prevention of the later development of non-resectable melanoma, but have little availability.) I am not sure if this is for the BMS or Merck product, but patients will be given anti-PD1 or placebo (nothing) every 2 weeks until progression. His main worry in trials like this (a couple more to follow) is related to accumulated side effects. When talking about NED patients, you could be dealing with years before progression, which is great!!!....but how much drug can a body take?!!!!

BMS 936558 vs Dacarbazine or Carboplatin and Paclitaxel (investigator's choice) Phase 3 trial:
To run (?) 23 months, started in November 2012, with BMS anti-PD1 given every 2 weeks at 3mg/kg, while the other arm is given their drug every 3 weeks in patients with Stage III/IV unresectable melanoma who progressed during or after 2 or fewer treatment regimens (including failing ipi). Exclusions include: prior BMS anti-PD1, corticosteriods 14 days prior trial, autoimmune disease, active brain mets, ocular mel, prior anti-PD1, anti-PD-L1, or anti-PD-L2. Search NCT01721746 for locations.

New Phase I/II trial for Stage III/IV melanoma unresected:
An adenovirus vector engineered to express hIL-12 (INXN-2001) is injected into the tumor directly while an activator ligand (INXN-1001) is taken orally in 4 cohorts of 5, 20, 100, and 160mg/kg in 7 daily doses per study cycle with a max of 6 cycles. One intratumoral injection will be done per study cycle for a max of 6 cycles. Exclusions: No treatment drugs 28 days prior. If drug was ipi, 90 days of a washout is needed. If on prior anti-PD1 an evaluation regarding when and if participation will be allowed will be made by the "medical monitor". No occular melanoma. No symptomatic brain mets. No autoimmune disease requiring steroids. Search NCT01397708 for more info. NOTE: The idea here is that the drug injected into the tumor will increase the immune response and possibly decrease the blood flow available to the tumor while the oral drug will, in theory, activate the immune response as well.

NOTES:
This is just the gist of these trials. Search ClinicalTrials.gov for more and better information. Make your oncologist get busy on your behalf!

And, finally, when talking about some of these trial options with Dr. Weber, he acknowledged that had ipi or anti-PD1 had been discovered first....Dacarbazine would never have attained FDA approval...yet, we continue to use it. Incredible.

It is hard to realize that I have been going to and from Tampa every 2 weeks for 6 months and then every 3 months for the past year and a half!!! But....I have. I return in March and then in June for the final two infusions assuming that scans remain clear. Despite some posts on various melanoma forums with patients alluding to continuing the meds indefinitely....that is NOT going to happen. Dr. Weber let us know that, as I suspected, BMS is NOT going to supply the drug for patients in this study any longer than the prescribed 30 months. I was not keen on doing that anyway...but that is the bottom line. When we asked about post trial follow-up, Weber said that he would like to continue to follow patients in this study every 3-6 months if possible, to collect data, to see what happens to us next, help us with side effects, etc. Of course, there is no assistance offered (as has been the case all along) for fees related to travel/flights, accommodations, etc. So...I'm not sure. I think information over time is essential for strides toward a cure for melanoma. It just amazes me that drug companies have so little concern or assistance for all of those things. My R & B management team (that would be Ruthie and Brent) have decided I will be going every 6 months...but....we'll see about that. There's another 6 months to get through before we worry about that business!!!

Stage III/IV, resected, NED arm of the MDX 1106/BMS 936558 trial with 6 months of vaccines at Moffitt....latest intel:
N = 31. Since start of trial, 2 patients have died and 6 have progressed.
According to Dr. Weber on this visit, "only one other patient has significant vitiligo". (He noted that he may look at the cells collected during my leukophoresis to try to ascertain whether or not there had been a development of antibodies against melanocytes. In theory, this would mean that my cells are killing anything melanocyte related....from the basic pigment in my skin...to melanoma. And, if that is the case....it would be a desirable result to try to attain in all patients.)
Again, according to Weber, patients in this cohort with no treatment, experience progression within 6-8 months, while this group is now more than a year out with a rate of progression that is much decreased.
He notes that he would like to follow patients after the study is "completed", but no more drugs will be given and there is not a particular protocol (or assistance) for that.
Final results of this study will not be tallied until some time in 2014, however, there are plans for the initial data to be presented at ASCO in Chicago in June 2013.

Other news:
The Merck anti-PD1 product may be performing even a little better, but the numbers from its studies thus far are small and time will tell if its rates will hold.
N = more than 80 in the "nonresectable" arm of my same trial, and while results were deemed positive for that group as well, I have no new specific numbers to report other than a "30% response rate" per Dr. Weber.

From one rattie to another....hang in there. Long tails are handy! - c

Thursday, December 13, 2012

Yes, my scans last week remained clear/unchanged, with no evidence of disease. Brent and I are currently ensconsed in our La Quinta home away from home after the requisite drive to Atlanta, flight to Tampa, and Alamo rental. We had a fun dinner at the Taco Bus! Pretty yummy! Check it out if you're in town. Best get some rest. We get to start our Moffitt fun and games at 0730 tomorrow. Wouldn't want to miss the butt crack of dawn in Tampa Town. - c

Tuesday, December 11, 2012

My life with cancer began almost 30 years ago. In my twenties I worked as a nurse at our local Children's Hospital. While most patients in this area, at that time, were managed by St. Jude's in Memphis...getting their assessments, plans, surgeries, inductions, etc., initiated there...our hospital provided some maintenance medications and managed extraneous illnesses and sepsis for those little patients when they needed it in a hurry and/or to help avoid one more trip away from home for those families. Being good at IV starts (some patients had ports and some did not) I often helped in their care. I purchased a bag of dill pickles from the grill in the kitchen downstairs before every shift when I knew Michael was on the floor. He was an incredibly bright, and a little bit bad, completely bald fellow of 6, whose diminutive size made those unaware think he was a child of around 3. I knew better. And once he started talking...they did too. I also knew he was probably smarter than I was, and certainly had the "old soul" wisdom that children in his position seem to gain. Despite his mouth ulcers, he loved sucking on the dill pickles I would bring....often threatening me with a "knuckle sam-ich!!!" if I pretended not to have them.

I administered vincristine, methotrexate, adriamycin, and cisplatin. Those old drugs with their horrible side effects frightened me. I didn't feel I knew enough to give precious little bodies such vicious poisons. I worked hard to learn more and take the best care I could of my little charges.

I spent hours bent over crib beds helping doctors put life saving lines in babies with various cancers, gave evil cocktails of antibiotics and anti-fungals to children with super-infections secondary to their immunocompromised conditions after chemo. Once I stayed at the hospital over 24 hours in order to assist in hospice care for a family watching their 4 year old little girl die after multiple surgeries, including a pelvic exoneration and innumerable rounds of chemo, due to a Wilms tumor that had ravaged her abdominal cavity. Sadly, the parents had suffered almost more than they could endure. They could not agree between them, on the course of action to take during their child's last hours. Each vacillating almost as the wind blew, between the desire for a full code and to let her pass in peace. As one of the few nurses there (why me I'll never know) who could keep them calm, I was asked to stay on until she passed. She was on a continuous morphine drip. In between, when her heart rate would rise and she would moan in pain through her unconscious state, I had orders for various other narcotics to administer rectally and as an IV push. The medications I administered through that long day and night and into the early morning again were more than enough to render an adult unconscious many times over. I would push them slowly, longing for peaceful, calm respirations, that let me know I had eased her pain - Simultaneously fearful that my drugs would stop them completely, while almost wishing that they would. She finally died peacefully in the arms of her parents, united in their love for her once more. I have thought of them many times over the years and hope that they have found peace.

And then came melanoma. Who knew? Since then I have experienced much of what the film below addresses. Excisions, biopsies, surgeries, radiation, PET scans, CT scans, MRI's, various types of tumor testing. Even the latest in the feeble, yet somehow resourceful and inspiring human battle against cancer....immunotherapy.....as a rattie in my anti-PD1 trial. Attempting to prevent melanoma from hiding itself in its protective shroud and allow my immune system to dispatch it....for good. It is a bit long, but I think well worth your time. Click on the link below to see a history of the past 50 years on the front lines with cancer.

The film brought so many thoughts and emotions to the surface for me. All my patients. So many more than I can begin to mention here. The pretty teen with Hodgkins and her bright pink and blue wigs. My peculiar perspective having lived on both sides of the fence. The incredibly brilliant doctors and scientists who bet their careers on their beliefs and worked relentlessly to prove their hunch...to the benefit of us all. The strange position I have found myself in over the past 3-4 months: Via some strange crossed wires within the machine that is marketing and companies who know more about you than you think they possibly could....I have become the recipient of an onslaught of material and advertising for all sorts of melanoma drugs that AS A PROVIDER (not patient) I can administer to my patients. Something, as a Pediatric Nurse Practitioner in a primary care setting, I am not even qualified to do!!!! And there's Patti, representing for melanoma in the film. I think of her daily. Wishing her and hers my very best.

So....there it is. My life with cancer. Strangely tied to amazing children, their brave families, researchers I have never met, current experts in the field whose names flow off my tongue as though they live next door, incredible people whose strength and bravery I admire and seem like friends, though most of us will never meet. What tangled webs we weave. How much we have yet to learn. - c

Thursday, November 29, 2012

For me...stories of love and support...from one person to another...no matter how difficult the circumstances, no matter how futile the effort may appear, no matter how seemingly small the event, proves to me that there are angels among us, who know how to really live, how to share their heart, and how to make those in distress and pain find ease. I hope the following angels that I have stumbled upon touch your heart as they have mine.

From a mom, who puts aside her own fears and pain so willingly to fully embrace her daughter's life, love, disease, struggle and spirit. I am full of admiration for them both. I can only hope that I would do half as well.....

Maybe you need to watch "The Princess Bride" first. As it was one of the first movies Brent and I shared, it has always held a special place for me. Funnily, I was just quoting this particular line...."Hello, my name is Inigo Montoya. You killed my father. Prepare to die."....just yesterday, making a similar point as this writer, though not as well. On the other hand, the love Al shared with his brother, comes through loud and clear, no reference point needed...

And then, there are strangers, who no longer are... Who have gone out of their way to think of me and lift my spirits. Jeanne has done that many times, perhaps not even fully realizing her gift. Thanks. You have meant so much.

Sznol: The most important data from the abstracts relate to long-term survival with ipilimumab.... Those studies have consistently shown a flattening of the curves at 3 years. So, the survival at 3 years, at 4 years, and at 5 years is very similar, suggesting that you are getting long-term durable responses in these patients.

Weber: It sounds like we could possibly even use the phrase functional cure for some of these patients. Do you think that is realistic possibility?

Sznol: ...for our own patients and for some of the patients treated in the phase 2 trials, we have had follow-up going beyond 5, 6, or 7 years that shows no evidence of relapse. You can actually start using the word cure for some of these patients. Of course, one never knows whether they might relapse at 10 or 15 years, but still, 8 to 10 years without any evidence of progression would functionally translate into cure.

Weber: Michele Del Vecchio [reported] a significant number of patients who received reinduction therapy. We don't have a lot of data about the outcome for those patients, but what do we see here?

Sznol: ...their data is impressive and are consistent with data that were presented by...Hodi. [Patients with an initial response to ipi...stable disease or some evidence of clinical regression....were allowed to receive another 4 induction doses of ipi if they had disease relapse or progression after 24 weeks.] It really suggests and it has actually been true in our own anecdotal experience that patients who have an initial response to ipilimumab or prolonged stable disease followed by disease progression can get additional benefit from another 4 doses of treatment.

Weber: Let's talk about that PD-1 abstract [by Sosman].

Sznol: ....This is probably the most active melanoma drug we have ever administered and one of the best tolerated.... The overall response rates went up a bit since the ASCO presentation and are now around 31%. The durability of these responses are impressive. When I looked at the data recently, I believe they showed that 70% of the patients still have ongoing responses, and several of these patients have responses out beyond 2 years.....This is probably the best drug that we have for melanoma. I myself have treated 16 patients in that trial with metastatic melanoma; 5 of those patients have near-complete responses, and none of them have relapsed. One patient is now at 4 years without progression....

Weber: Data I presented at ESMO suggest that it may be useful to sequence PD-1 and ipi.... People who fail to rspond to PD-1, which is still 70% of patients given the drug, up-regulate CTLA-4 on the CD4 and CD8 cells; this suggests that if you are given PD-1 first and do not respond, you might subsequently respond to ipilimumab. That might push the response rate up to very high level indeed.

Sznol: Your data actually provide a strong rationale for combining these agents; that is based on important clinical correlative data.... Even if you sequence them, because of the long half-life of the antibodies, you may well see more autoimmune toxicity. The question is whether that toxicity will be manageable, whether the risk-benefit ratio will be acceptable. But my own guess is that this will be a more active combination and I believe the toxicities will be acceptable and manageable.

My take:

Brent was very sad that my first comment was: 70% of people with melanoma are still totally F%#K@$!!!!!!

This is the first time I have ever heard the word "cure" come out of the mouths of these babes!!!

Sunday, November 11, 2012

Saturday, November 10, 2012

In spite of sick puppies, flu B and asthma, large numbers of sick kiddo's at work, the nerve wracking effort of trying to save plastic computer babies in a PALS (Pediatric Advanced Life Support) online course, and situations that are off the chain....it was a bright, lovely fall day on the mountain. Enjoy your beautiful fall! - c

Thursday, November 1, 2012

...you must run with it. And EVERY day.....IS.....a gift. It is your chance, your obligation, your debt...to those who didn't get one.

You only have to be alive for about ten minutes before you realize that this world can dish out some unfair crazy crap that really, really sucks. But, so what? Right after that, you will be given a rainbow. I promise.

Now before you start smirking and raising your eyebrows...NO! I am not going to tell you..."I am so glad I got cancer. It changed my life in beautiful ways." Absolutely not! Melanoma has been a pain in the ass, and other places...for ALL the people in my life...not just me. It has not been fun. It has cost me time and treasure. It has caused worry and stress. However, I HAVE been given a gift. I am still here. Most people in my shoes get to walk in them for about 6 months. I've been wearing my Stage IV melanoma kicks everyday for almost three years. Much, much longer than I ever dreamed. So...did melanoma change my life? Most certainly. I am more appreciative of love and humor. I am incredibly good at prioritizing. I am not about to let a little pain or a lot of worry completely ruin a day. I don't know how many more I will get to have, so I am not about to waste one.

But the truth is...we all have an "expiration date". Most folks just don't have as clear a heads up about when that is. I would like to think I would have fully appreciated the love and generosity so freely given by so many in my life without melanoma in it as well. Maybe I would have/did. But, who can say? What I can say, today, with certainty...is that I do now. Today.

Thanks to all of you who love me for who I am, and in spite of that as well! I love you, too. And, Bentie....you're my heart.

Wednesday, October 31, 2012

This time of year has taken on a strange meaning for me. Having spent 28 years taking care of kids...that's a lot of goblins. Fun was had all day in the office trying to make the day a little brighter for the sick ones as well as the healthy ones insulted by vaccines and other injustices. Then, there are the memories of my own critters as Pocahontas and Powhatan, Spider man and Pinky-pink power woman, a goblin and a fairy princess...little ones at the door tonight...treats all. Just this past weekend, B and I had our third lovely evening attending Vince Gill's annual benefit performance for the children treated at our local center for child abuse. A real treat for a great cause.

Two years ago I was experiencing a bit of a trick, being just days post tonsillectomy, due to my third met from melanoma in 6 months time. Currently, I am dealing with some pretty tricky and significant skin flares and itching with joint aches secondary to my last anti-PD1 infusion. Meanwhile, so many on the east coast and those dealing with active melanoma have certainly been tricked indeed. My small ordeal is nothing more than a treat in comparison.May your coming days be filled with more treats than tricks - c

Friday, October 26, 2012

When in New Orleans, you have to have beignets and chicory coffee at Cafe du Monde! Opened in 1862 in the New Orleans French Market, it has become a New Orleans institution. I was surprised to note that the servers were almost exclusively Asian. Not a judgement, just an observation of a significant change over the years, which has been noted in reports of the city's demographics, with a recent increase in the Vietnamese population in particular, as well.

Located on the Mississippi River, New Orleans was a principal port city in the 1800's and remains one of the largest, busiest ports in the world. Continued development of the area over time, led to city growth as well as erosion of the surrounding marshlands and swamps. Development of the Gulf Outlet Canal, in particular, left the city, with more than 51% of its land noted to be at or below sea level, at risk to hurricane-induced catastrophic storm surges as played out in heart rending detail by storms like Katrina.

Night life in The Big Easy. Street performers continue to work their trade. There has been a definite increase in the palm and taro card readers since my last visit. Many talented musicians still play at various street corners, along with the usual hucksters, "tap" dancers and preachers.Traditional Jazz, however, is becoming a bit elusive in this city who gave birth to the genre.

Vieux Carre' (The French Quarter) dates from the French and Spanish eras and their influence remains evident in the food and architecture.

Saint Louis Catholic Cathedral is a central landmark in the city and provides a backdrop to the mule carriage rides and artists who work to sell their wares on the wrought iron fence outside its grounds.

Color in the quarter.

If you are lucky enough to get to visit this beautiful city, be sure to eat at Willie Mae's Scotch House in Treme'. Her fried chicken is absolutely THE BEST I've ever had. A muffaletta from Central Grocery should not be missed. Brent picked us up a couple to enjoy as a picnic on our return trip home. And, finally, DO NOT MISS a chance to check out Cochon Butcher on Tchoupitoulas. It is unbelievably delicious. Their head cheese with chow-chow and mustard, duck pastrami sliders, roasted brussel sprouts, and buckboard bacon melt with collards on white were worth the trip alone.

New Orleans is one of my favorite places to visit. Brent and I just returned from what was, I think, my seventh trip to that unique American city. I used to get off work from my 7a-3p shift at the hospital and drive down 59 to visit Ruthie who lived there at that time. No map. No cell phone. No GPS. No real directions. But, I found her! We still laugh about the craziness of that first visit.

New Orleans was the destination of my first ever plane flight. A plane ticket acquired through some consulting work for a hospital. I used the precious ticket to visit the Big Easy and Ruthie again. I was so excited. Flying! Me! The trip was done in a blink. It was filled with wonder and pride. I was having my own adventure, earned through my own talents, enjoyed alone, by choice. A thrill I wish for anyone, at any age, if you have yet to experience that kind of personal challenge, independence, and autonomy.

Over the years, the myriad aspects of my nostalgia for New A'wlins has expanded exponentially. Growing up among the swamps, mossy live oaks and pines of South Alabama makes the bayous of Louisiana comfortingly familiar. I have so many fond memories of fun with Ruthie. My first hurricane... Yep. From Pat O'Briens. Have to say, not a big fan of an odd mixture of alcohol combined with fruit juice that turns out to be incredibly similar to red Kool-Aid. But, I am ever so glad I've been there, done that! My first egg roll! My first city bus ride. Lame, I know! No Chinese restaurant or public transit available where I grew up!!! But, true, nevertheless!

So many great visits with Brent. The American Academy of Pediatrics has their meetings there periodically. While pregnant with Fred-o we had a wonderful visit. Brent went off for his morning run with the promise of bringing me breakfast on his return. MANY hungry minutes, if not hours later, a very bedraggled Brent FINALLY appeared with a sad, beat up, sack of pastries. It was February. Not thinking, Brent had taken off for his run, only to discover on retracing his steps, that his path was cordoned off for an early Mardi Gras parade. He ended up running a total of 15 miles that morning in order to reach the end of the parade barricades and double back to the hotel. The parade officers were apparently unsympathetic and unmoved by his desperate plight. I still don't feel particularly sorry for him either. Hungry pregnant lady left in the lurch! We still have our Panama hats from an earlier visit, as well as fond memories of Miss Ruby's...one of the best restaurants I have ever had the privilege of having barbecue shrimp in. Now, you have to understand that barbecue shrimp in N'awlins has nothing to do with barbecue. Never mind...it's just too complicated for this post. Then, there's the memory of B's questionable appreciation of the small, perfectly cooked crab hanging from the side of his cup of gumbo at the same meal. His real sentiment was, "Waiter! There's a bug in my soup!" Silly boy!

On our last visit, just before Katrina, we took the kids to Mardi Gras. Bourbon Street was shared in small doses. They got to see some of the early parades. We almost froze to death, after I had promised balmy weather. They were so excited to catch the beads being thrown from the floats. Unfortunately, drunken adults also think that plastic shiny beads are of great value and have a much greater reach on a then 10 and 12 year old. Fred was a pretty agile guy, but bead accrual was not going well. I gave Brent the heads up to sneak over to a stand that conveniently sold beads to the unsuccessful parade watchers and purchase a handful so that he could provide a selection of beautiful beads heroically 'caught' by dad!!! The kids were so enthralled with all the sights and sounds that they didn't notice his absence. However, Brent was gone so long, I wasn't sure the subterfuge would hold out. He finally returned...loads of beads in hand. The hero indeed!!! Later, I asked about the incredible time it had taken. He maintains the following...to this day...

"I made it over to the stand, which was over in the dark, by the way!!!, and got a handful of beads from the guy. I was almost back over to you when I finally got under the street lights. I looked down. I couldn't figure out what was on the beads for a minute. Then, I realized!!! I had beads with penises threaded on the chain between them!!!!! I couldn't give those to Rose!! I had to go back and exchange them for different ones."

I couldn't stop my laughter or myself from interrupting...."What excuse did you give for needing to exchange them???!!!!"

"I told him I had thought they were chickens!"

Only in New Orleans...do they sell penises on a string. Only there, does B take them back "because he thought they were chickens!!!!!"

Sometimes, nostalgia catches me by surprise. As Brent and I walked along St. Charles and picnicked in a park near the universities, I couldn't help feeling the long ago ache of wanting so much to be smart, to be educated, to do something important. In my teens I wanted to attend either South Alabama (and then train in marine biology at Dauphin Island....a whole plan that B finds incredible since I am fearful of many animals and desperately sea sick on most any boat! Good points, I realize, but I still love the bay, tidal pools and marshes!!!), Tulane, or UAB. With no fairy god mother waiting in the wings, I soon adjusted my perspective and called on the pragmatist within. Those universities and their tuition were not within my grasp. However, a full books and tuition scholarship to the local junior college was. I set my aim on that and was awarded it upon high school graduation. I am not sad about how things turned out. I attained my BS from the University of TN. Years later, I was admitted to Emory, Vanderbilt, and UAB, where I ended up getting my MSN because they had the schedule that best met my needs. With all that said, it was still a tangible pain, just last week, to walk in that place, and feel the ache and desire of that girl...who wanted to do so much.

And then, there are the streets. I love the street names in New Orleans. I would move there, just to be able to use them in everyday conversation. Annunciation. Tchoupitoulas. Felicity. Carondelet. Derbigny. Constance. Liberty. Magazine. Chartres. Harmony. Pleasant. Terpsichore. Toulouse. Poydras. Constantinople. Bienville.

Today, there are still far too many roof tops with blue tarps. Too many tall buildings, many seem to have been hotels, with broken windows and overgrown parking lots, abandoned. Too many homeless. Canal Street and St. Charles, main avenues for the genteel, are rutted and difficult to drive on because of the inundation of water and heavy emergency vehicles in the wake of Katrina. The lower part of Canal and all the roads in the quarter are currently under massive construction. Skinned and waiting for resurfacing. Sidewalks broken with street lamps down...awaiting and in process of repair. All good of course, but really? Only now? This many years after Katrina who wrought her devastation in 2005! The wheels of government assistance move slowly. Treme and the 9th Ward continue to struggle. Which they always did, only now, more so. Many buildings, homes, are boarded up. Abandoned.As Americans, we are always at our best when our various immigrant ancestors put down roots, meld with the conditions and produce and people at hand. They bring their culture and blend it with those of others. No dish served daily in New Orleans is replicated in Spain or France, Canada or Africa. Yet, without all of those folks, the gumbo, etouffe, macque choux, red beans and rice, andouille and boudin, po boys, remoulade, jambalaya, cajun coffee and beignets would not exist. And the world would be much sadder for it. - c

Sunday, October 14, 2012

Brent has made Jack-0-Lanterns with the kids for 22 years now. Fredo had to work and then come home and work (Poor baby!!!) clearing out years of debris under the porch so Rose and B were on their own this fall break. My only job is to photograph the event, and as you can tell by the ghostly circle on the print...I don't do that very well!!! But, there they are, shielded from the elements on the Element! Hee, hee!

The artist indoors....

Pretty girl!

Critical carving!!!!

Headed back to K'ville!!!

And there you have it! Glowingly awesome....Punkin PI and a PIrate Punkin!!!

Friday, October 12, 2012

According to a report on the abstract "Immuno-chemoablation of metastatic melanoma with intralesional Rose Bengal" by Agarwala, Thompson and Smithers in Ecancer news, Oct. 8, 2012:

Injecting cutaneous melanoma sites of stage III-IV patients with PV-10 (Rose Bengal) delivered sustained high response rates, reports an open label phase 2 study....It also revealed an additional 'bystander' effect in nearby non injected lesions. Rose Bengal is a derivative of fluorescein, an agent that has been used for over 80 years to stain necrotic tissue in the cornea and as an IV diagnostic of liver impairment. Its novel use in melanoma was discovered by Provectus Pharmadeuticals Inc (Knoxville, TN) while exploring different formulations for use in photodynamic cancer therapy. By serendipity the company discovered that PV-10, a formulation developed to be administered directly into solid tumors, destroyed tumors without the need for light activation....[Of course,] the approach is only applicable to a subset of melanoma patients with cutaneous accessible disease.In this Phase 2 single arm trial, 80 patients with stage III-IV melanoma received up to four courses of PV-10 injected into up to 20 cutaneous and subcutaneous lesions. For each, a bystander lesion was identified that underwent biopsy to confirm melanoma, but did not undergo injection. Patients were treated at seven centers in Australia and the USA.Results: Objective response was achieved in 51% of target lesions (25% complete response and 26% partial response). Furthermore, disease control (combined Complete, Partial, and Stable responses) was achieved in 69% of lesions. In bystander lesions: 33% = objective response and 50% achieved disease control in these lesions.Overall survival: Stage III patients achieved a mean overall survival of at least 12.6 months versus 7.3 months for Stage IV. According to Dr. Agarwala, "These results confirm the robust response that can be achieved with PV-10 that was first seen in a preliminary report presented in 2010 in 20 patients."It was also noted on MRI of 2 patients in the study that there was regression of lung mets. "These were small lesions. It was an interesting observation but we will need a randomized study to demonstrate the effect," said Dr. Agarwala.A Phase 3 randomized control trial, with 180 subjects with Stage III-IIIC melanoma, randomized to PV-10 or systemic chemotherapy is expected to start in early 2013 at centers in Australia, the US, and the EU. Dr. Agarwala noted that Rose Bengal was likely to be used in combination with other agents, such as ipi and vemurafenib. 'Additionally, injection with PV-10 could be used as an adjunctive treatment to trigger an immune response prior to surgical removal of the tumors," said Dr. Agarwala.

And, to think!!!! I place fluorescein in some kid's eyeball at least once a month to check to see if they have a corneal abrasion from strange kiddie activities involving various sports or disasters like: "my sister poked me in the eye with her straw!" Perhaps, I should have been rubbing it over my skin. I would be the color of a pumpkin with liver disease and glow in presence of a black light, but hey! I'd be ready for Halloween!!! - c

Monday, October 8, 2012

From the moderator of the MIF Forum: "I have just heard that the Merck PD1
trial, a phase three, will be opening 500 global slots in mid November.
This will be for IPI refractory (folks who have progressed on IPI)
randomized to a choice of 4 chemos (leader decides) and crossover
allowed at 12 weeks to PD1 if progression occurs. There will also be an
expansion of the current Merck Pd1 trials, for the IPI naive and
refractory, 2 and 10 mg trials. I hope to have more detail and
locations asap to post."

Check out the Melanoma International Site... I will add updates here as well. - c
PS Extremely thankful for the crossover clause!!!! Good Luck.

I wouldn't say that I know Mrs. P. well. But, I have known her for over 14 years, worked with her on community projects, and waved hello at least weekly. She has always been incredibly nice and supportive of me, and even more so of my daughter. I always thought of her as a good deal older than myself, but looking at things now, noting the age of her child, I realize she is probably very near my age, if older at all. She just always seemed...well, matronly. Her hair was always "done" in a "set". Or else, she was lamenting about how bad it looked, because she hadn't had a chance to roll it. She has always been so supportive of my running, but when I would stop to chat as she piddled about in her yard, she would recall how she used to love running, but could no longer do such things because she had a knee injury (Which was real and significant, she had to have several surgeries to repair it.) and had "gained all this weight". Her comments were always kind to others, but unfailingly self-critical. I am extremely uncomfortable with self-deprecating comments and humor. I have never found them funny. Heavy comedians with "fat jokes". Not funny. Just disconcerting. What are you to do when someone tells you they can't run because they are too fat? Answer, "Well, that's for sure!" Or lie, in the face of the obvious, "Oh, no! You're just fine!" Both seem grossly inappropriate. So...I never knew what to say. But, I knew exactly what I wanted. I wanted Mrs. P. to be the person SHE wanted to be. Whoever that was. A person who may have weighed a bit too much and did little odd jobs in her yard with her hair "done". A person who was active and participated in outdoor activities that she seemed so wistful for. Either way, a woman who was proud and accepting of who she was. But, how do you say that? How do you give that to someone? How do you gain that for yourself?

Not long ago, I was returning to my neighborhood after a run, and was passed by a grey convertible, top down, nice looking lady with hair flying in the breeze driving, with a huge smile and big wave. Who in the world? That looked like Mrs. P.!!! Sure, enough, as I turned down the street, there it was, the convertible, parked in her drive. Later, I spoke with her briefly as she worked among the flowers in her yard. Slim and trim. Younger. Cheerful. Happy. No self-deprecating comments today.

Her transformation makes me smile each time I pass her house, no matter if I see her or not. You GO, Mrs. P!!!! Let your hair and your freak flag fly! You are wonderful and I'm glad you know it!!!

So, for the rest of us:
Live like Mrs. P...let the top down...enjoy the breeze...let YOUR freak flag fly!-c

Saturday, October 6, 2012

It has been reported that the Mayo Clinic in Jacksonville, Florida has slots in a trial with the Merck anti-PD1 product. There are openings for both prior ipi (Yervoy) use, as well as for patients who are ipi naive. Call for an appointment or more information if you are interested!

Also in anti-PD1 news: A BMS phase III anti-PD1 trial should be enrolling soon. That is great news, since they will have skipped the Phase II portion. The downside is that now, the trial will be randomized and the comparison treatment is yet to be announced. Addtionally, the trial is to be an international one with limited slots in comparison to the number of patients in need...but it is progress. Will post any additonal information as I acquire it. - c

Thursday, September 27, 2012

What on earth do these things have to do with one another??? Everything. And, not just here on earth either!!!

In November of 2011, NASA launched Curiosity (The Mars Science Lab) with the rover landing on Mars August 5, 2012. Since then, Curiosity has been sending back more data than all other previous rovers combined. Go, Curiosity!!! But, I like one particular transmission best.

Back in February of 2011, NASA's administrator, Charlie Bolden, a self proclaimed science nerd who attended a science magnet school when he was a kid, contacted the BEP's (That's the Black Eyed Peas...to those of y'all not in the know!!!) front man, Will.i.am to see if he wanted to help with the agency's efforts to draw more young students into science, technology, and math classes. On August 28, 2012, Will.i.am's new song, Reach for the Stars, blasted across the air waves FROM MARS, back to the earthlings here at home!!!! ( For fun, google the event to check out some photos of brilliant space scientists gettin' down to some orchestral will.i.am!!! Too cool!!!)

Then, on September 21, (just last week!!!) MD Anderson Cancer Center in Houston announced a "moon shot" (referencing the can-do spirit of the 1960's Apollo space program) to dramatically reduce cancer deaths from 8 types of cancer in the next 10 years. The program, to launch in February of 2013, plans to spend $3 billion to fund 6 research teams dedicated to accelerate the time cancer treatments proven by research will be used clinically for patients who need them. Cancer types selected are: acute myeloid leukemia, myelodysplastic syndrome, chronic lymphocytic leukemia, MELANOMA, lung cancer, prostate cancer, triple negative breast and ovarian cancer. These particular cancers were picked after a year long review by doctors and scientists "because the state of knowledge in the field today is such that if...acted upon with the technologies we have today, there would be a subsequent effect in the level of mortality," according to Dr. DePinno, president of MD Anderson.

But, possibly even more importantly, the Star Base program, an amazing interactive class room that seeks to bring 5th graders greater exposure to the fields of science, technology, and math, hired the best teacher in this galaxy and beyond just this past August. There, she brings the skills, knowledge, and principles of science and discovery to hundreds of children with incredible enthusiasm and an energy that lets every child know....they CAN....Reach for the Stars!!!!!! (That's my Ruthie!!! She teaches ME everyday!) Just think, she could be teaching the next NASA scientist, the researcher who cures cancer, and tomorrow's hot rapper....TODAY!!!!!

Why do they say the sky is the limit? When I've seen the foot steps on the moon?And I know, the sky might be high, But, baby it ain't really that high.And I know that Mars, might be far. But, baby it ain't really that far!Let's reach for the stars, Reach for the stars!Let me see your hands up! Hands up! Get 'em up high. Hands up!If you really feel alive, Live it up, live it up!!!

Saturday, September 22, 2012

I love "people watching". Airports, parks, restaurants, shopping, all provide ample opportunity. However, if you repeat a more than an hour long commute to your workplace for years, as I do, AND you're far sighted, as I am, it is another great place to watch. In fact, it is an even better venue, because you get to meet the same cast of characters over and over. Here are just some of the people I don't know...but kind'a feel like I do....

I like the older gentleman, who walks most every morning, despite some hemi-paresis, on a road not far from my house. His dedication to continue, everyday, inspires me and sets my morning off on the right foot.

I like to think about the guy I've never seen at the Komatsu plant. The one in charge of where they park, and how they position, the newly minted yellow monsters on their grounds. The giant machines are lined up in precise lines and curves, with their massive yellow beaks standing identically tall or reaching forward like the necks of mechanical swans in a perfectly manicured Japanese garden. I wonder if he is also the one in charge of the water that is of an unnatural cobalt color, as it trickles over the man-made rock fall. If so, I would guess he also thought of planting the row of cherry trees along the sidewalk whose blossoms are so beautiful each spring. I bet his house is very neat and very feng shui.

I don't like the 'special' Signal Mountain folks who think they don't have to get in the far right hand exit lane ahead of time, but can cut others off at will. Luckily, as I leave home before 7 am, I miss most of them. Drivers from 0645 and 0700 are much nicer than those who drive afterwards.

I like the girl with the long blond ponytail, red polo and khaki pants, who works at the Georgia welcome center. Every morning she walks the grounds, looking for debris left by visitors and removing it so that others may enjoy the pretty, lush, green field. She is very punctual and I can judge my own progress by her location. I worry about her feet though. In that thick grass, the early morning dew would surely leave her shoes wet all day.

I like the young guys in the Hubble Glass truck. The driver is steady. The two passengers are either talking animatedly, with broad gestures or are slumped on each others shoulders in deep slumber. I wonder which state of being the driver prefers.

I really loath NCHKPEA, in her grey Honda Accord, with her strangely black hair spiked up like a chicken. She is a bully. I watch her whiz in and out of traffic, tail cars who have absolutely nowhere else to go, as if with her being a jerk behind them, all the traffic in front of THEM will suddenly dissolve and a magical path for her royal specialness will automatically appear. I may be guilty of driving too fast on occasion. But, I don't drive mean. There was a grey Accord crashed and backwards in a ditch near my exit once. I was certain it was her. It wasn't. Oh, well, since school is back in session, I leave earlier than I did in the summer and have not been plagued by her jerkiness lately.

I like the older lady who walks with a forward tilt...everyday....rain or shine...round the Kroger parking lot, down Walnut Avenue, with a turn on the side road and round again. I wonder how many circuits she makes. She worries me a bit when she crosses at one of the lights. Her hesitating steps are like an invitation for disaster to more 'special' people who think that they have a unique pass that allows them to turn in front of oncoming traffic, even though their light has already changed, and, I fear, barrel into little old ladies. Wonder if she would like to walk with my friend on the mountain. "Now, Harold, you know we have to walk in this direction!"

I like the guy in his faded blue work shirt who drives the slightly disheveled yellow Chevette toward Chattanooga around 530 pm. I get to see him, elbow out the window in most weather, tooling steadily at no great pace, in the far right lane if I get out of the office on time. His car always reminds me of a bumble bee, with its two broad black stripes from nose to tail and its steady high pitched hum.

I like the guy in the red Smart Car. He actually looks a bit like Mr. Bean. Surely, he must be buffeted by all the 18 wheelers on the road! But, he just tools along, unperturbed.

Thanks to all my fellow travelers. You have kept me entertained. To some of you....PLAY NICE!!! To all of you, I wish you the best, wherever the road may take you. - c

Friday, September 21, 2012

A woman, just a bit younger than myself...dealing with Stage IV melanoma for the past two tears, while working as a professor and mother of two children (ages 5 and 10 years) in Europe has started an entire melanoma awareness and advocacy group, almost single handedly, there. She is amazing. Please check out a video she made. Link above. She echos things I think about...a lot.

Sunday, September 16, 2012

...and counting. With this many trips under our belt, we have this down. But, there is always something to amaze and entertain us in our travels. The drive down to Atlanta was pretty uneventful, with Brent having to apply his imaginary, super brake only a few times. We got to the airport in good time, and because we were traveling Delta rather than our usual Air Tran, due to better flight times, had to use the "red" side of the terminal. Pros: With Delta we could pick our seats when purchasing the ticket and the previously mentioned better flight schedule. Air Tran had canceled one of its afternoon flights, apparently. Cons: Delta flights were much more crowded, as was the parking, which was full in the daily rate section!!! And, HORRORS!!!! The gate we had to use had no Atlanta Bread Company! Their veggie sandwich has become a pre-flight staple!! Had to make do with Popeye's fried chicken. The flight was ok. Why do I always have to share my seat...literally!!!!...with large people? Oh, well....

Down to Tampa, and red is right!!!! The "red" side of THAT terminal has the best rental car area with the easiest exit to drive out of in the direction we wish to go....in my opinion!!! "Helpful" floor walker man, in the car park, points out the TWO, count them...two...available 'compact' options in Alamo's very fluid lineup. To my consternation, both were smelly! One in a cheap perfume air freshener trying to cover nasty kind of way, and the one I settled on, in a plastic, newly unwrapped, shower curtain liner fashion. It was a relatively new, plastic, Kia, Rio. Pretty zippy and fun, much like a go-cart. I liked it. Brent used his special brake a bit more.

We had decided to fore-go Waltz...which seemed to be suffering the effects of his absence the last time we were there...which makes me feel a bit guilty...you know me...to visit Columbia again. We got there easily in a pretty significant down pour, to which Brent declared in the particularly up-beat tones he utilizes frequently on these trips, that, "It is moving south!" Ok, Mr. Weatherman of amazing observational powers during the MIDDLE of a storm! We shall see. So, we sat in our plastic car in the parking lot, chatting and waiting for the storm to move south, so that we could take a walk about Ybor City and then have dinner. Sure enough, Mr. Weatherman was right. The rain abated and we walked along the pretty cobbled sidewalks amid a few art places, Cuban cigar makers, bars, restaurants, defunct versions of same, and tattoo parlors until we ran out of road and it started to mist again. We made our way back to Columbia for dinner.

The dancers were practicing in tee shirts and tights with great stomping and enthusiasm, but were not for show, as we were ushered by them to our seats in another section. I like the area we were placed in the best, as it looks more like a garden with white stone walls. The sangria was WITHOUT flies this time. I was not hungry since Popeye's was still sitting like a greasy lump in my tummy, so Brent decided to order a couple of their tapas dishes and the paella for us to share, which, per the menu, requires a wait of at least 30 minutes, in order to give me time to gain an appetite. Our waiter with obvious New Jersey overtones, made various recommendations and admonishments, but finally approved of our order. While waiting, we filled out our card to designate the charity of our choice that Columbia would be giving a portion of our bill to. They do this every September, which is petty cool and the second time we've gotten to partake. On his return to our table, our waiter took our paper for the charity (on which you note your own address) and reported conspiratorially, "Well! We've got someone from your neck of the woods in the kitchen!""Really?" we ask, thinking....who on earth could that be? "Uh, huh! Emeril!!! He's here filming for his new show!" "Ohhhh." We try not to look too incredulous. But, he quickly moves his little Tampa/Yankee self along, so we don't have to worry. (I presume he means Emeril's TV show, The Originals, where Emeril highlights restaurants that are iconic in various cities and towns.) So, what's the deal? New Orleans.....Tennessee.....all mixed together in that chocolate gooey middle that is the portion of the United States, vaguely in the center, below the Mason Dixon Line. Oh well...his take on geography left us puzzled and laughing.

Dinner was ok...no sign of Emeril, our neighbor and pal, though. We made our way to our fav La Quinta, to try to get some rest before our fun at Moffitt in the morning. It was not to be. At midnight, new neighbors moved in with barking, squeaky dogs, running and yelling children, but even more dismaying....adults who had to shout back and forth in the hall about ice buckets....for over an hour!!! Brent finally called the front desk to ask that things become slightly quieter, and around two am, they did. REALLY felt like giving a big shout out, outside their, very quiet door at our fun, let's go to Moffitt time of 0700!!!! But, I restrained myself.

All went well at Moffitt. Easy stick and vampire like blood draw in the CRU. I'm telling you, some of the best nurses EVER work there...and I've known A LOT of nurses. Our exam/chats with Dr. Weber and others, I've already reported. Then, it was back to the CRU for the 30 minute anti-PD1 infusion, followed by the 30 minute saline rinse (so to speak), and 30 minutes more of vital signs (now decreased from the original 1 hour per the newly signed trial contract!!!). All went well, although this is the second time in a row that I developed a small bit of urticaria (hives) to my face during the infusion. It faded pretty quickly. I've got to remember to premedicate with Benadryl!! Then, we were off to the airport.

We got to our gate earlier than we had hoped, despite the horrible nightmare that is security in Tampa. Seriously, Atlanta has been recognized as the world's busiest airport in passengers since 1998 and in landings and take-offs as well, since 2005, with 92 million passengers moving through in 2011 and almost 1 million flights (923,991 to be exact). Meanwhile, Tampa dealt with 33,000 flights and 16,732,051 passengers last year (see wikipedia if you don't believe me!!!). Despite these facts, getting through security in Atlanta is a piece of cake compared to Tampa with their security workers trained in the mode of Barney Fife crossed with I'm-Gonna-Sit-on-My-Ass-and-Show-YOU-Who's-in-Charge-NOW!!! It makes passing through their "security" simply BIZARRE!!!!! So of course, as I was getting the requisite Tampa pat down, B was in detention, goofy boy, because he had left my unfinished bottle of water in his jacket pocket and it was discovered...yes, indeed, more than three ounces of objectionable liquid...as his jacket was x-rayed with his shoes in his standard issue, grey bucket. Anyhow, we made it through, to find that an earlier flight with Delta is not a thing to be had. They book every flight to the gills, and then some. So, we chilled and chatted until our regularly scheduled flight.

The flight was fine. Found our car on its unfamiliar side. Decided I felt fine enough to make a run for supper and a few groceries at the Dekalb Farmer's Market on the way home. Traffic was amazingly light and we made our way with few difficulties. Just when we thought we were home free, and dealing with our last significant challenge, turning left across two busy oncoming lanes with no turn arrow, with cars zooming past us through the green light, we see it...before our very eyes...oncoming idgit lady, turns to her left directly into the people heading in her direction past us. I cover my ears!!! B grabs hold of the OH SHIT handle in the ceiling...but, oddly enough....fails to apply his magic brake....and...BOOM!!! OH, YEAH! She is rammed full force, to her right side by folks zooming past us. I was just afraid someone was going to end up spinning around and heading into us....having had some dealings with that before!!! But, no....they were suspended in time. But, only for a moment...this is Atlanta, after all. Folks started zooming around us and the two dead cars like ants in a disturbed ant hill. Never mind that there was no space to be zooming in. "GO!!!! They look fine! GO!!!!!", shouted the calm, sweet, ever caring and concerned doctor and philanthropist to my right! "Just go!!!" So....GO we did. We had a delicious dinner at DeKalb...better than anything we've ever had in Tampa and for both of us...a mere $17.00. We picked up a few things and made our way home....no other excitement to be had.

....and pruned two butterfly bushes into submission while Brent ninja'd all the branches away. Then, we made a trip down the mountain to a nursery where we got a Brown Turkey Fig, 2 perennial geraniums, and an Indian Holly Fern. B dug holes for me in the back shade garden for the last three and planted the Fig for me in the front sunny area. Meanwhile, I cooked oven roasted chicken thighs with lemon, onion and thyme with roasted cauliflower and maduros for tomorrow. For tonight, there was rice, grilled asparagus and tuna, along with roasted portobello mmushrooms, all flavored with a soy/ginger/lime/fish sauce/sesame oil dipping sauce. Pretty good, I have to say! But....it is back to work tomorrow. Enjoy your week - c

Saturday, September 15, 2012

...and I am doing pretty well. Put in 2 miles with B and Z yesterday and made a quick trip to and from Knoxville to see the kiddo's and deliver their new phones! Ran almost 3 just now...had to cut it a little short to avoid yappy little dogs who drive Z crazy. Wouldn't want him to think they are possums and smush'em!!! Shoulders and wrists remain achy, but...pain and discomfort won't kill you! The weather is lovely, blue, and bright here today and we will be attending a wedding later this afternoon on the mountain. Wishing you a beautiful life together, Hayley and Brandon! Happy days - c

Thursday, September 13, 2012

...and I want to be one of the Bangin' Rackettes with Clairy Browne!! Weekend = tired. Monday worked but felt crappy and my sweet (and I really mean that!!!) nurses one by one...said..."You look tired!" "You don't look like you feel good!" "You're pale. Are you ok?" And ultimately..."Why are you here???!!!" Oh, well. Worked anyway. But, thanks to an awesome boss, (who would have let me off, period....just can't stand to do that to already scheduled patients!) I left an hour early since my last hour wasn't booked yet. Anyhow, had really nasty muscle aches...like calf myositis with the flu...or generalized muscle soreness with a fever. By Tuesday I was better, with the more expected arthralgias...most in my wrists and ankles, but the sore muscles were resolved. Wednesday was pretty ok and today: I ran 2 miles with Z, picked up limbs, pruned some shrubs, made a bouquet from the last of my roses, picked the last cherry tomatoes, did laundry, paid bills, tidied the house, changed bed linens, made braised chicken thighs in Riesling for supper, roasted a pork tenderloin to take to the kids tomorrow, and grilled zucchini and peppers to go in quinoa for tomorrow's supper. It is finally cool and breezy here...so I also cleaned the porch and set it up for chillin' after work. Anyhow, in my next life I will definitely come back as a lounge lizard!!! Lovin' Clairy Browne and the Bangin' Racketts. Check them out! You'll feel better the minute you hear them....no matter what ails you!

...I'm gonna write what I want you to do to me in a letter. I'm gonna write it for good or for bad or for worse or for better. I'm gonna write it for you so that you can be my lovah......oooooh...help me get out......of......my head. Darling, I'm writing you a love letter......ooooohhhhhhh.....help me get out....of my head!

Sunday, September 9, 2012

I do not enjoy the sort of posts I have felt obligated to share today, they hurt my heart and my head. I am doing ok. Feeling rather tired, as though I did 5 miles AND the cardio AND abs INSANITY workout yesterday....which I most certainly did NOT!!! I'd better get the house together and laundry done so I can be back at work tomorrow. But...I promise stories of the adventure that is travel to Tampa will come. Enjoy your Sunday. Love - c

As I mentioned in my June 10th post, I agreed (as did most other patients in my study) for BMS to test my tumor for the expression of PD-L1 on its surface. The presence of this ligand on tumors, as reported June 2, 2012, New England Journal of Medicine, from the BMS-936558 anti-PD1 study of patients with a variety of tumor types, indicated that 25 of the 42 patients [tested] had tumors that were positive for PD-L1. "Of these 25 patients, 9 (36%) had an objective response. NONE of the 17 patients with PD-L1 NEGATIVE tumors had an objective response....These preliminary results must be interpreted with caution..." Yada yada yada!!!! So...at this point BMS....as well as innumerable anxious melanoma patients would like to know if their tumor expresses PD-L1 or not. Since, given the data (minimal though it is), it is unlikely that a tumor WITHOUT PD-L1 would respond to anti-PD1, while a tumor that does have that ligand....might.

So....Where's the test? Where's the result? Dr. Weber still does not have the results himself. He says that BMS keeps giving him the run-around, saying that they have to create a test that is valid, reliable, etc. (Important to be sure.) Currently, he is under the impression that he might get results in October. When will I get results? On MY tumor? Probably....about never. I am told that to give me results is tricky because this is still an experimental test on an experimental point about an experimental ligand whose implications are unclear, ambiguous, and with questionable import. SERIOUSLY?????? Do you think, that at this point in the game, there are any folks in this study who do not realize that this is all a crap shoot????? Do you not see that we deal with the ambiguities of the whole entire thing.....DAILY????? Is it not clear to you peeps, that I, and all my fellow ratties, sign, and acknowledge said crap shoot papers, repeatedly...putting in writing that we KNOW this is an EXPERIMENT and the outcome is variable...at best????? You think, at this point, that we will not be able to comprehend that the results of this test for PD-L1 were acquired with a new technology, yet to be fully proven? You think, we are unable to realize that the ramifications of the presence of PD-L1, or not, on our tumors, is not fully determined????? I'm not sure what any of you really think, but, I suspect you know we understand all the bull, much better than you do. However, here's the rub...for you and BMS....you think we will run for the hills and leave your study in the lurch, and seek better treatment elsewhere, if we learn our tumors are negative for PD-L1.

So, folks keep asking me...."When will the test for PD-L1 be available for us like the BRAF testing currently is, so we can make more informed decisions about taking anti-PD1 or not?" My answer....not soon. It all depends on when BMS (or some other company) is ready to put it out there. And that, depends on many things. It depends on how well their anti-PD1 product really does in its Phase 1 trials. Then, how it does in Phase 2 trials. And then, what the correlation between those results and the presence of PD-L1 on those tumors turns out to be. For all the folks who want anti-PD1 to be magically available TODAY....I have some sobering news. While there is talk, of starting Phase 3 trials as early as 2013 with a BMS statement regarding a 'registrational development program' in which they are reportedly trying to move via a filing they have made with the FDA, 'from early clinical development in Phase 1 trials straight to a Phase 3 registrational program and expect the registrational trials for melanoma to begin at the end of this year, early next year'. The Phase 1 trials are not completed. In fact, they are not even close. Take my trial for instance. It is set up to last 2 1/2 years from start to finish. Some of us have been in that trial for almost 2 years. That's just the first group. They didn't start ENROLLING the third group until around January or so of this year. In March, only one patient was two doses in, in the 10mg/kg group. So, that means, that the results for my study, that started treating patients in 2010 will not be reported out, with final results, until the last patient (yet to be enrolled!!) has completed 2 1/2 years in the study. At best, that will be roughly in 2015! At, best. Sorry. But, that is the sad truth.

So, when will anti-PD1 be made available? When will a test for the PD-L1 ligand be out? I don't know. And, it is very frustrating indeed...to be the rat...with no say or voice in the decision. Well....maybe a little voice! I'll keep speaking, if you keep reading. Hang in there my friends - c.